Sunday, April 28, 2013

As Autism Awareness Month comes to a close this week, let’s
review what we already know about autism.

1. A lot of kids have autism. Whether the statistics are the
accepted 1 in 88 or the more recent 1 in 50 or the suspected even more
prevalent numbers of children who have autism, the numbers are increasing rapidly
from previous figures of one in hundreds or one in thousands. Moreover, the
arguments as to whether the reasons for this startling increase may be better
diagnosis or broader definitions of autism or more children actually affected
by autism matter less than the reality that many families are dealing with
autism.

2.Despite the
large numbers of children diagnosed with autism, research seems to bring us no
closer to finding ways to prevent or treat autism. This week, the media
reported three research report findings that have questionable usefulness in
dealing with autism. One study looked at placentas and suggested that children
with autism are born with placentas that have more folds in them than those of
typical children, which could be an early marker for autism. However, the study
is rather limited, looking only at a fairly small sample of placentas. Also, as
Dr. Jonathan L. Hecht, associate professor of pathology at Harvard Medical
School, noted, these folds could be the placenta’s way of responding to many
kinds of stress, so they may not be specific enough to predict autism. Two
other research reports in the news this week discussed developing drugs and
vaccines for autism, both of which may be helpful to those currently dealing
with autism. However, if drug companies can profit from autism drugs and
vaccines, will there be incentive to find ways to prevent autism in the first
place?

3. Early intervention is important. Obviously, addressing
any issues as soon as they are discovered makes good sense. However, many
parents have difficulty getting their children diagnosed early. We suspected
that Alex had developmental delays at least a year before he was diagnosed with
autism, and we shared our concerns with his pediatrician, who simply reassured
us that boys develop more slowly. Would another year of intervention have made
a difference? We will never know. Moreover, finding services for children with
autism is a difficult task for parents. School districts, overwhelmed with the
number of children with disabilities, tend to provide bare minimums when it
comes to valuable services, such as speech therapy and occupational therapy.
Private therapy is expensive, may not be covered by some insurance, and may not
be readily available. Many private providers in our area have long waiting
lists because so many children need services. Even if parents know their
children have autism and actively seek help for them, they may not be able to
get the critical early intervention.

4. Autism awareness is shifting to autism acceptance. Since
many people know someone with autism, more people are aware of autism. In an
earlier blog entry [March 17, 2013] “Should Autism Be Neither Seen Nor Heard?” I discussed
incidents reported in the media where children with autism and their parents
were treated badly in public situations. Certainly, people need to be understanding
of children who cannot control their behavior at times and sympathetic to
parents trying to help their children. This tolerance, however, is not the
focus of autism acceptance. Rather, some parents of children with autism and
adults with autism want not just understanding but celebrating of autism. This
movement known as neurodiversity criticizes parents like us who want to make our
children better through biomedical and therapeutic interventions. They claim
that autism is part of the personality, and trying to eliminate behaviors is
rejecting that child for who he/she is. Indeed, some parents write in their
blogs that they don’t want to change a thing about their children with autism.
Not surprisingly, I have noticed that these parents typically have very young
children, and I wonder if they will feel the same when their children’s
behaviors potentially escalate from “unique” to aggressive in adolescence. Nonetheless,
those of us who have not accepted autism as a way of life for our children have
dug deeper with testing that proves our children have medical issues, such as
yeast overgrowth, food allergies, and heavy metal toxicity, that are making
them physically ill. Because we love Alex unconditionally, we do not accept
that illness is a natural state for him, and we suspect that his behavior is
often influenced by how he physically feels. To ignore what the evidence shows
would be negligent on our part; therefore, we continue to strive to make him as
healthy as he can be. We accept Alex for who he is, but like all parents, we
want him to have the best life possible, which is free of the obstacles autism
has imposed upon him. Until we are content that he is healthy and happy, we
will accept no less for him.

“And may the Lord our God show us
his approvaland make our efforts successful.Yes, make our efforts successful!” Psalm 90:17

Sunday, April 21, 2013

Earlier this month, we had to complete a level of care needs
assessment survey for Alex with the help of his caseworker assigned by the
state to manage his disability funds. By answering a series of questions about
what he can and cannot do, we provide information used to determine the amounts
and kinds of support services he needs. At this point, Ed and I are providing
nearly all of these services ourselves, but when Alex eventually goes into
supported living, this information will be vital to making sure that his needs
are met. While it’s sometimes difficult to admit that Alex can’t do certain
basic tasks, we know we must be honest in conveying his needs to be true
advocates for him. In the past year, he has made good progress in improving his
behavior, but he still needs quite a bit of care on a daily basis. As I
explained to Ed’s sister last week when she was here visiting, in many ways,
Alex is just a giant toddler.

One of the primary areas of needs assessment is self-care.
Because Alex has poor fine motor skills, despite years of occupational therapy,
he still needs a great deal of help completing basic daily tasks to take care
of himself. Moreover some of the medications he currently takes hinder his
motor movements, requiring that we assist him. For example, Alex can undress
himself, but he lacks the motor planning skills to dress himself independently.
If we place a shirt on top of his head, he can pull it over his head and with
some help place his arms in the sleeves. Similarly, he needs us to hold his pants
so that he can step into the legs. Since he hasn’t mastered zipping, buttoning,
or tying, we have to fasten his clothes for him. For this reason, he usually
wears clothes that require no fastening, such as slip-on shoes, t-shirts, and
track pants with elastic waistbands.

While we are fortunate that Alex can use the toilet
independently and never has accidents, we still have to remind him to close the
bathroom door, make sure his pants are pulled up all the way when he’s done,
and wash his hands afterward. Another self-care issue requiring our help and
supervision is grooming. Alex likes to be clean and neat, but his fine motor
skills again hinder him doing things for himself, such as shaving, cutting his
nails, combing his hair, etc., so we must do these things for him. Thankfully,
he enjoys being groomed, so he is very cooperative when we complete these
tasks. In addition, we must supervise his bathing and tooth brushing, as he
would only remember to clean small parts of himself, forgetting to wash/brush
completely. Specifically, even
though he knows he has 32 teeth, he seems to only want to brush the front
eight.

Although Alex can feed himself with a fork and spoon, he
hasn’t mastered how to cut his food with a knife, which means we have to
prepare most of his food for him. His shaky hands make pouring drinks difficult
and spilling them a constant likelihood; therefore, we fix his beverages and
put them in cups with lids and straws for him to drink. Besides the crucial
feeding assistance, Ed and I must supervise Alex’s various medications that he
takes throughout the day. While he is cooperative about taking the medicine, he
is not capable of following the dosing schedule, and he needs for one of us to
place the pills on his tongue so that he can swallow them. However, we are
thankful that he can swallow pills, especially since he has to take so many of
them every day.

Another area of needs assessment involves self-direction,
such as planning. Since Alex’s verbal skills are limited, and his handwriting
is nearly illegible, he relies upon me to make phone calls regarding his
disability services, doctor appointments, prescription refills, and therapy
session, as well as to fill out needed forms for him. As his “personal
assistant,” I coordinate all of these important tasks for him and am thankful
I’m organized enough to keep all of his appointments straight. The state has
also appointed me as his authorized representative to oversee his disability
benefits and keep track of money spent for his needs. In addition to contacting
various professionals who help Alex, we must also provide transportation since
Alex can’t drive or ride a bicycle. Moreover, his lack of judgment when it
comes to safety issues means that we still have our childproof locks engaged on
the back doors of our cars so that he can’t suddenly open them.Also, we don’t trust him to walk alone
because he is seemingly oblivious to traffic and could easily get hit by a car
if he weren’t paying attention.

Alex has other safety concerns, as well, that we must
address. To prevent him from getting into things that could hurt him, we have
childproof covers on our basement and garage doorknobs so that he cannot go
into those places without our supervision. In addition, we still have some of
our cabinets secured to prevent him from getting into potentially dangerous
things. Because he called 911 a few times to see what would happen when he was younger,
we have hidden our phones so that he cannot call in false alarms. In addition,
we have hidden away in boxes most of our breakable knick-knacks after he went
through a phase where he would throw things to get attention. Similarly, we
keep our bedroom door locked at all times because in the past Alex had an
annoying habit of dumping my jewelry box onto the floor, making a mess. Although
he is probably past that destructive stage, we have not tempted fate. Once
again, we have had to make our house toddler-proof, or in this case,
Alex-proof.

As we look toward the future, we anticipate that Alex will
continue to make good progress with his behavior so that we can trust him more
and gradually ease restrictions around the house. We also hope that his motor
skills will improve so that he can do more tasks independently and safely.
Until he is ready to do things for himself, however, Ed and I will continue to
walk a step behind him, making sure that all his needs are met.

“Care for the flock that God has entrusted to you. Watchover it willingly, not
grudgingly--not for what you will get out of it, but because you are eager to
serve God.” I Peter 5:2

Sunday, April 14, 2013

This past week was an interesting one for Alex because he
had an opportunity to meet two new people and visit with three more that he
hadn’t seen in a while. Although a stereotype of autism is difficulty in
adjusting to new situations, Alex loves meeting new people because he can ask
them his somewhat offbeat questions as he tries to get to know them better, or
at least so that he can mentally quantify them in his mathematical mind. When
most people meet someone for the first time, they ask about the other one’s
occupation, family, hobbies and interests, etc. However, Alex only really wants
to know things that can be answered with a number. In many ways he reminds me
of a quote from one of my favorite books The Little Prince in which the
narrator criticizes adults for their fascination with numbers, stating,
“Grown-ups love figures. When you tell them that you have made a new friend,
they never ask you any questions about essential matters…Instead, they demand:
‘How old is he? How many brothers has he? How much does he weigh? How much
money does his father make?’ Only from these figures do they think they have
learned anything about him.” Indeed, Alex must truly be a grown-up because he
sees nothing wrong with any of these questions, and if we hadn’t warned him
repeatedly about not asking adults their age, weight, and salary figures, he
would boldly ask for this personal information.

On Monday, he met his new behavioral therapist, who will
replace his current behavioral therapist who is moving out of state. His
current therapist, Melissa, has been very good to prepare him for the change
and allowed him to ask questions to ease any concerns he might have. To make
the transition smoother, the two therapists will both see Alex for a couple of
sessions so that the new one can observe the therapy session routines and so
that Alex can be with a familiar person as he gets to know the new one. When I
first met his new therapist last week, I knew right away that Alex would take
to her instantly because she has a pleasant voice, something he values greatly.
After Melissa introduced the new therapist to Alex, she asked him if he’d like
to ask her any questions. He turned to me, knowing full well my answer would be
no, and inquired if he could ask her age and weight. I reminded him that we
don’t ask adults those questions and suggested that he try again.

Undaunted, he asked her how tall she is, and she told him
that she was very short at 5’1”, and I could see him mentally putting the four
of us in a lineup of her at the shortest, me next at 5’3”, then Melissa at
5’6”, and himself the tallest at 6’0. This made him smile. Next, Melissa
explained to the new therapist about Alex’s system of ranking people’s voices,
an imagined range he calls “dropodos,” and asked Alex to tell each of us what
our dropodos level was. In line with our heights, from shortest to tallest,
each of us was assigned a number corresponding to his perception of how deep
and strong our voices are. Alex was further fascinated by his new therapist’s
voice because, as a native of Turkey, she has a slight accent, something he
finds desirable in people, perhaps because he has grown up listening to the
Brooklyn accents of my husband and his family and the Southern accents of my
family.

After Alex had noted her height and voice, I knew what his
next [odd] question would be. “How many teeth does she have?” I’m not certain
why Alex needs to know this information, but I suppose this numerical value is
just another way to classify people and perhaps measure their ages since he
knows children have fewer teeth than adults do. Also, Alex has always enjoyed
going to the dentist, and he may associate thinking about teeth as a pleasant
experience. Nonetheless, he was delighted that his new therapist had an
intriguing answer for him. Like him, she currently has all 32 of her teeth, but
she explained that in June she will have either two or four of her wisdom
teeth removed. Unfazed by his unusual question, she told him that she can tell
him more about it in a couple of months, when she will be able to update him
with a new tooth count. This answer delighted him so much he shuddered with
joy. Consequently, their first meeting was a success because Alex found all of
her answers to be satisfactory.

On Thursday, Alex had a surprise visit from Ed’s family, who
flew in to Chicago to see my nephew’s graduation from Navy boot camp this
weekend and stopped by to see us, as well. Knowing that he would
repeatedly ask us when they would arrive, we didn’t tell him they were coming
beforehand. Handling the surprise amazingly well, he was just happy to
have people that he could ask his series of questions. Because Ed’s sister and
her husband had been here a couple of years ago, he remembered them, but he had
new people to interview in Ed’s younger sister, whom Alex hadn’t seen in many
years, and in my nephew’s girlfriend, whom we had not met before. Since Alex
knows everyone’s birthdate in the family, he didn’t need to ask his aunts or
uncles their ages, and I cut him off before he could ask my nephew’s
girlfriend. I could see the wheels
turning in his mind that he really wanted to ask how much everyone weighed, but
wisely chose instead to ask them their heights. He found it interesting that
his two aunts and I are all exactly the same height, but he seemed more pleased
to have discovered that his uncle is taller than he is.

After lunch, Alex decided to resume his questioning by
asking his aunt how many teeth she has, and she kindly obliged him by actually
sitting there and counting them aloud for him. This thrilled him, as he again
happily shuddered because someone was taking his question seriously. She went
on to explain that while her son was in boot camp, they removed all of his
wisdom teeth, so he had gone from 32 to 28 teeth recently, which Alex also found
interesting.

We’re pleased that Alex has an inquisitive mind and enjoys
meeting people, and we appreciate those who seem to understand his need to ask
somewhat unusual questions to get to know them. I guess one good thing about
Alex’s gift for numbers and excellent memory is that he would make a good witness: he
could easily tell a person’s height, describe the person’s voice, and detail
their dental records. Fortunately, he will likely never need to share that information,
but that knowledge allows him to remember the people he’s met, using the parameters
that have meaning and value for him.

Sunday, April 7, 2013

This past week began Autism Awareness Month, and many people
whose lives have been touched by autism have used this time to make others more
cognizant of this epidemic. For parents of children with autism, awareness
involves more than wearing the distinctive autism puzzle-piece logo or lighting
blue lights. Autism awareness is a way of life for us. Yesterday I read an
excellent blog entry written by an autism mom who detailed a typical day in the
life of her family. [To read this article, click here.] Impressed by her
devotion and her willingness to share what her life is really like, I decided
to try and do the same. However, I got bogged down thinking about how much time
we spend giving Alex pills and fixing food for him throughout the day, as well
as helping him with tasks he cannot complete on his own. Instead of providing an
hourly report as she did, I decided to write about the highlights of our past
week so that others can see that having a child with autism—even an adult child, like
Alex—entails planning, coordinating, and supervising in ways different from those
of parents of typical children. With that in mind, here is a glimpse of last
week with the Byrnes.

Saturday—We had a 10:00 appointment with Alex’s new doctor,
who wanted to see him a month after his last visit to see how he was progressing
with the supplements he had recommended. After I explained how we had gradually
phased in vitamin D, gentian violet, probiotic with prebiotic, and vitamin C
over the past few weeks, the doctor carefully examined Alex. Fortunately, the
yeast overgrowth in and around Alex’s mouth has improved, but he still has some
thrush and cheilitis. The doctor suggested increasing the doses of vitamin C
and probiotic/prebiotic and gave us a prescription for the antifungal drug
Diflucan. He also noted the acne on Alex’s face and recommended a progesterone
cream to decrease the inflammation and prevent secondary infection. We were
once again impressed with this young doctor’s enthusiasm about making Alex
healthier and his compassionate manner.

Sunday—Alex seemed pleased with the contents of his Easter
basket. Since he is on strict gluten-free and milk-free diet, we always have to
be creative when it comes to treats for him. Fortunately, he is a fan of Kraft
Bunny Mallows marshmallow bunnies, jelly beans, and marshmallow Peeps
(specifically the blue bunnies), all of which are allowed on his diet. In
addition, I found him some nice paperback books in the children’s nonfiction
section of Barnes and Noble on some of his favorite topics: the sun, the moon,
the earth, thunderstorms, and earthquakes. While I was at the bookstore, I also
found a small "computer sitter" figure of Sheldon from The Big Bang Theory, which is one of his
favorite television shows, and a street map of towns in Northwest Indiana,
where we live. Of course, the last thing I grabbed—the street map—was his
favorite gift.

Monday—I received a letter in the mail that elevated my
blood pressure from Indiana Medicaid, who provides disability services for
Alex. In a previous blog entry, I explained that they had sent us a letter in
January threatening to cancel Alex’s benefits because they alleged that I had
“failed” to send them his financial records. After several calls to them, they
discovered that they had received the information I had sent in a timely fashion,
but someone had forgotten to note that in his file. Fortunately, my
organization skills and tenacity prevented his benefits from being
cancelled. The letter I received this week stated that they had sent us a
letter in January indicating his benefits were to be cancelled, and a class
action lawsuit had been filed against them because they had failed to notify
people properly. Because the letter was not clearly written, I had to read it a
few times before realizing that they hadn’t actually cancelled his benefits, which
made sense because they have been paying for services for him the past few
months. However, to be certain, I logged onto their website, looked up Alex’s
files, and discovered that he was still covered. While I was relieved that his
benefits were still in place, I wasn’t pleased that they had me worried and
that I had to double check to make certain his status was correct.

Tuesday—We took Alex to one of his favorite places, the
Target Café, for a snack of potato chips and Sprite. Ed and I have decided that
outings to the Target Café provide us with a nice break, as well, since Alex
happily watches people come through the store, and an added bonus for him is
when small children, whom he finds especially amusing, appear. With something
tasty to eat and drink and a good people-watching view, Alex thoroughly enjoys
himself and smiles the entire time he’s there. We’re pleased that something so
simple and inexpensive makes him happy. Besides, Ed and I are also fans of the
hot pretzels they serve there, too.

Wednesday—Alex’s behavioral therapist came for her weekly
session with him. Before she arrived, I did my regular inspection of our main
floor to make certain that the house looked nice before she arrived. In
addition, I filled out his weekly behavioral report for her, noting any issues
we had observed during the past week. As usual, I wrote that his primary weakness
has been speaking too softly to be heard, which shouldn’t seem like a problem.
However, as she has explained to us, not everyone will be as patient as Ed and
I are about having him repeat himself. Consequently, we have been working with
him to make his voice audible. In addition, she and I worked together on Alex’s
newest ploy, leaving in the middle of his behavioral therapy sessions to go to
the bathroom. I suggested that she not even mention the topic, as he was likely
to obsess on it, and I closed the bathroom door to hinder his efforts to
interrupt his session. Our plan worked, as Alex only tried to leave the session
once, and I told him to go back because he did not need to go to the bathroom.
I think he learned that two women could outsmart him any day of the week.

Thursday—Alex’s case manager who oversees his state
disability benefits came to see us to complete his annual level of care survey.
The state uses this information to assess what services and funding Alex should
receive. To determine his eligibility, Ed and I had to answer several questions
regarding his physical mobility, his self-care skills, his self-directional
abilities, and his learning skills. His case manager helped us immensely as she
was able to explain the nuances of the questions and provide examples of what
kinds of skills the questions intended. As usual, Ed and I were in complete
agreement on our answers regarding Alex’s strengths and weaknesses. After his
case manager left, Ed commented to me that this process was a good news/bad
news experience. The good news is that Alex qualifies for disability funding
and services; the bad news is Alex has weaknesses that qualify him for
disability funding and services.

Friday—Alex was delighted to have books arrive that he had
ordered from Amazon using gift cards he’d received for Christmas. He had chosen
a book on winning strategies for the dice game Yahtzee, a chart explaining how
to bet on the card game blackjack based upon the odds of winning, and a trivia
almanac with questions for every day of the year written by one of his heroes,
Jeopardy champion Ken Jennings. While he was pleased with these books, he was a
little disappointed that another book he ordered had not yet arrived. Because
The Handy Science Answer Book is apparently out of print, we had to order it
from a specialty bookstore. Although Alex will be thrilled when that book arrives,
I will be even happier since I won’t have to listen to Alex ask me if the mail
has come, when I think it will arrive, and where I think the book currently is
in transit. I just hope he’s as enthusiastic about that book when it finally
does get here.

As I reflect back on the past week, I feel thankful that we
have found wonderful people to help us with Alex. From his doctor to his
behavioral therapist to his case manager, these support people have guided Ed
and me with their expertise so that we can help Alex reach his full potential. Now
if that Handy Science Answer Book would hurry up and arrive, I would be even
more grateful.

“Tune your ears to wisdom,and concentrate on understanding.Cry out for insight,and ask for understanding.Search
for them as you would for silver;seek them like
hidden treasures.” Proverbs 2:2-4

About Me

Pam Byrne is the mother of an adult son, Alex, who was diagnosed with autism in 1996, at the age of four. Since then, she has researched autism and pursued various therapies to help him reach his full potential. Along with her husband, Ed, she coordinates Alex's support services, including behavioral, recreational, and music therapies and respite care. A graduate of Valparaiso University, she is a retired middle school English teacher. She lives in Valparaiso, Indiana, with her husband and son.